Monday, May 31, 2010

Jus' livin'

The spank patrol spanked me. Sheesh. I guess these folks operate some sort of program to troll blogs. I could opt to erase the comment, but I am all for freedom of speech, so have at it.
* * *
I slept for about 18 hours yesterday. I continue to hide. I seek numbness, I think.
* * *
Sometimes we fail to accomplish something we have set our hopes on. We put our every effort into the project. We know we did not fail to do our best. Still the project is not complete. Should we continue or be satisfied with our effort?

If the project consumes our lives to the point of preventing us from doing and enjoying anything else, then call code. If the same problems plague the project continually, time to scrap it. We should not punish ourselves if the outcome fails to meet expectations.
* * *

I ran across this graphic. Think what you will.
* * *
You still are in my heart.


Sunday, May 30, 2010

Who's to bless and who's to blame?

Though the past lies in the dust of yesterday, some of it clings to me.

I earned my stripes as a child in a small college town.

My father served as head of the journalism department. My mother, who worked at Phillips Petroleum during World War II, taught for a time at the high school, but eventually became a lady who lunches.

I never, not once, heard my parents argue. While this may sound utopian, in reality I missed out on a valuable skill. I lack the ability to argue without taking the words personally. I walk away before I argue.

My parents did not spoil me; but I never lacked for something they considered essential. I had ballet lessons, music lessons. I played softball. I got my first car as a senior -- an almost 20-year-old Chevrolet that we called Old Brown. Dad won Old Brown in a poker game, though I did not know this for years.

My parents spanked, though not often. Two times stick out. A young friend and I decided to walk to my dad's office. We made it. I was 4. The other time involved misbehaving in public. I had to wait a couple of hours for that spanking. My conscience worked overtime that day.

My parents came from large families. In the early years, we made the journey to grandparents' houses for Thanksgiving and Christmas. The grandparents lived a hour or so apart, so we would spend time at both sets. I had bunches of cousins. Good times.

When I was older, I spent a couple of weeks in the summer with my grandparents and a cousin. My grandparents owned a small weekly newspaper in an area that was drying up even then. There in that dusty, dark shop, I fell in love with newspapering.

The rhythmic slap of the old press mesmerized me. The literal bells and whistles of the Linotype. The rollers that applied ink on the small job press. The shiny metal ingots transformed into liquid silver. The big, backward wooden letters in their drawers.

My parents did not hug nor show affection. Was there love? I think so. But not what my soul craved. As a consequence, I yearn for affection but shy from someone's touch. A total mess.

Life goes on. I wish you peace.


Saturday, May 29, 2010

Life force

No matter how old we get, emotional issues continue as a force in our lives.

We want responses when we reach out. We want validation. We feel the chill of a cold shoulder. We might carry on day to day with the pain and uncertainty of an incurable disease, but the emotional equivalent of stubbing a toe sends us to our beds.

Preconceived ideas weave themselves into a relationship.

Today, we have relationships with people we never may meet. This places new emphasis on trust. That makes the random thing even more mind-boggling.

You know what? I care.


Friday, May 28, 2010

Holes in my heart

The whole world seems a bit off.

The weather throws her fits earlier this year. Most everyone I know stresses. And even the people who seldom fall to illness find themselves down.

Bright spots burst through occasionally. Old friends reconnecting. An email. A phone call. The spontaneity of a child.
* * *
I finally did some chores that hung over my head and weighed me down. Tape, CD in the mail.

Sometimes a simple act can turn into the biggest hassle. Wonder why that is?

Silence deafens.

Everyone acts. Some work at perfecting the art.
* * *
I have your IMs, your pictures, your music -- remnants of a friendship. The evidence we existed.

I think I knew from the beginning our time would be short. Each moment both taken for granted and relished. I wanted to be there for you. I wanted to be there for me.

I do not bring out these treasures. They remain just out of sight, ready for the call.

Dude, it's another miss you day.


Thursday, May 27, 2010

Tell me why

Some questions never find answers. You pick them up and turn them every which way, but you never discover the hidden latch or trigger to unlock their mystery.

For some questions, the answers reveal themselves in time. Rather like a crossword puzzle. Slowly filled in.

For some questions, we know the answers but refuse for a variety of reasons to acknowledge them.

Questions, like worry beads, always are there.

Did I do the right thing? Did I fail you? Did I fail me?

The what if questions have to be the most destructive.

I know in my heart you were leaving no matter what. Nothing I could do would change that. But I wonder why you chose to tell me what you did. I wonder why it went down the way it did. I will never know.


Wednesday, May 26, 2010

Colors of my life

My kaleidoscopic life shifts again. A slight nudge and the whole pattern changes. A colorful, fascinating show, sure to delight and entertain. Humph.

I am powerless to stop the shifting shapes, and they mesmerize me.

At times, I focus on the pile of darker shapes at the bottom. Useless as they seem, soon they will combine their strength to change the picture dramatically. Often the tiniest piece causes the biggest shift.

The constant movement separates pieces which fit so uniquely for a sole pattern. A shift or movement followed by awareness of a new pattern and the slowly fading memory of the last one.

Every piece in my kaleidoscope shines at one time or another. Some play prominently in several of the compositions, some fall to the pile at the bottom often.
* * *
I confess I use a questionable diversion in the mornings so I can write. I throw a treat party for the boys. Open pouch, shake treats around on the floor in the living room and soon the guys are following their noses and munching. No fussing at me. Free time.
* * *
I finally gave in to the craving. Sometimes you do what you gotta do. I ate half a 12-inch deep dish supreme pizza and almost a dozen cookies yesterday. Not in one sitting, by the way. Results: gained two pounds and cankles. Maybe now the urge will cease.
* * *
True friends rise to the surface when the waters are rough.
* * *
Later, dude.

Tuesday, May 25, 2010

Rockin' with nature

Yesterday humidity hung in the air like a translucent curtain. Last night, Mother Nature finally erupted into a bitch fit. Ms. Nature uses our area as her laboratory. When she needs attention, she mixes up some nasty mocus overhead and hurls it across the area and into Okieland. Last night she was testing her fits, vintage 2010.

A former colleague, Alex, took this shot as Mother's brew started to gain potency during a storm last year. Last night, Mother yelled and screamed and cursed for a few hours, but finally decided to call it a night.
* * *
I have reached the point in my illness where I wonder if one more day of isolation will serve me or not. I have a growing list of errands that add pressure in the decision-making process.

The food situation remains steady, though I seriously thought about driving to the store for ice cream and cookies about 6 p.m. yesterday. Thanks goodness that urge went away. I had French toast instead.
* * *
Thanks for being my friend.


Monday, May 24, 2010

Sick and tired of sick and tired

When illness strikes, every emotion, every call or non-call, every slight, real or imagined, even every breath challenges me.

The first few days before I actually break out sick, I spend wondering if I am sick enough to check with the doc. This indecision lies in the first few visits with doc. In one of those visits, he told me I was not a complainer, but he wanted to hear my complaints. That describes me to a T. So I tend to wait too long to contact doc, then I berate myself and worry.

Then I isolate. I want to sleep it all away. My emotional health crashes down around my broken body. When I am awake, my thoughts bounce from one topic to another, not settling on one long enough to identify it.

After a couple of days of isolation, I begin to wonder why no one cares. You see where this leads, right?

My physical body, in the meantime, still struggles and refuses to bounce back like it once did. Just sitting, the old arms and legs itch to move. Up I pop. Three or four steps later, when my sats fall to 83 with 2 lpm, I feel like a dog that was jerked by his chain just short of the taunting cat.

So my environment falls into a disheveled mess fit for "Hoarders." That in turn messes more with my psyche.

In my logical thinking head, I know this too shall pass. In my emotionally wrecked mind, I grow weary.

Times like these I miss you the most. You always made me laugh. You understood. You had been there and you cared enough to put out a hand to me. I do not want to start second-guessing this, too. Please.


Sunday, May 23, 2010

On a familiar path

I thought I did not want to write today. Between my infection and my general worn out, I figured a break would serve well.

TW's wife takes a path of which I am familiar. Though mourning falls to each of us in our own way, those of us who have been on that walk look back with understanding. We can reach out to help you out of the depths; we can steer you away from the pitfalls; we can stand a little ahead so you can see we still stand. In spirit, we hold you up as you move along.

If sleeping with the flag from his coffin comforts you, do it. If talking aloud to him makes him nearer, do it.

Our loved ones remain in our hearts as long as they beat. No one can take that away from us.
* * *
Only we know if our motives are pure.


P.S. Just now I discovered something which greatly saddens me. I understand.

No exit

Saturday, May 22, 2010

Meet my pet, Denial

OK. Tired of this sick thing. No more. Out the door.

I suffered (yes, suffered) from pneumonia a couple of years or so ago. We became intimate because I had refused to meet my "new normal."

Instead, I felt awful, spent almost a week lying on the couch, taking Tylenol and hitting my rescue inhaler every four hours. Finally, Connie came over, took one look at me and said I needed to go to the doctor.
I spent 10 days lying in the hospital bed. Not so unusual. Lots of us PHers spend time at our friendly ERs.

The point of this tale of woe: OK,  here it is: I was (and am) in denial. Percentage wise, PH kills 100 percent, if nothing else comes along first. I did my homework. I see myself as a realist. So, why do I not understand the severity of my illness?

Part of the answer lies in talking with other PHers. My PH falls in the moderate category, although the powers that be change up the categories as they learn more about the disease. Many, many of my friends fall into the severe range. Listening to them, my ills seem a trifle.

Next in the denial list: the oxygen issue. When the doc first mentioned it, I thought, oh no, not me. He did not push, just said it would help and let it be. Then I had a round of sickness. I begged the doc for o2. I managed to work full time a few years toting my bottle in a bag. At home, I faithfully used it 24/7. Sometimes, especially sweeping and other similar chores, the tubing gets in the way. I began to leave the tubing strung over a chair while I "just did this little thing." That developed into a habit of not using the o2 most of the day.

Duh, no wonder my health heads south and my mind clouds over. More denial. Denial does not change the facts. Nor does it serve me in a positive way. So why do I cling to denial like a dryer sheet on a polyester shirt? Do I hear an echo?
* * *
Thanks guys, you are the best.
* * *
Thanks, dude.


Friday, May 21, 2010

Upside of down

Once again I face a blank blog page.

Last night, when the steroids wired me so tight I almost hummed, I could have filled more than the alloted space. Now this morning, before I medicate myself, I am kinda like dirty dishwater. I know, you do not want to go there. Me either.
Some of the smallest gestures at unexpected times warm my heart. I wonder if that always has been so and I am just now gaining appreciation, or if my isolation (mostly self-imposed) forces me to awareness.

For instance, the more I learn about your family, the more I love you. I realize now I barely scratched the surface of you. But you let me have enough of the puzzle pieces to form a reasonably accurate picture.

Graciousness. Caring. Talent. Good hearts. Loving. These all fit into the big picture. Some of the sky and ground clutter are lost, but that does not keep me from seeing the image.

Thanks for taking me in. Thanks for accepting me. I treasure what you have done for me.

Then add to the list friends who accepted my heart when I stuck it out. One or two in particular in Chicago. And CFers. Compartmentalized neatly behind glass that shattered when you died.

* Sigh *


Thursday, May 20, 2010

Games people play

Have you noticed on FB that everyone wants to wish you a happy birthday? Greetings range from funny to wonderfully sweet.

But now a race begins to see who can get the message in first. Gradually the wishes started appearing at midnight. Then the day before. The me-first, me-first syndrome has taken over.

So happy birthday for 2012, if the world doesn't end.

Tag, you are it!

Bells, whistles needed

I woke up sweating again this morning. I had dreams, too. I am not usually aware of dreams.

Phoned my symptoms into the nurse yesterday. Then lay down. About an hour later, the nurse calls me to come in -- now. So I throw on clothes. The staff shows me in right away. And the doc spends lots of time asking about symptoms, etc. I go to X-ray to make sure no pneumonia plagues my right lung. He sends in the dude to give me a breathing treatment. Then comes the medrol shot. And on my way out, he arms me with prednisone and antibiotic, a script for a neb and some samples. Oh yes, and my personal favorite, Mucinex. (Those commercials are enough to make me gag.)

The woman who takes the money told me the doc lost several patients in the past few weeks. No wonder he seems off-kilter. The doc fits right up there with saints. He who checks on me at home on weekends to see if I am OK. That says a lot in my book.
* * *
 I talked to a really young cystic this morning. I wish it had been you rather than me. I had so little to offer him. I know the scare quotient breathes down his neck. I told him your story in three or four sentences. A teenager with a new baby. He mentioned that coughing sound.
* * *
One of my good friends got her wish and will put on her travelin' shoes. I am so thankful everything fell into place for her.
* * *
Not feeling so well now. Out of the gate galloping, but hit the rail on the first turn.
* * *
My heart flutters every time the IM pops. Is that not rather Pavlovian? Pavlov was a Virgo. Hmm.

Mourning dude.


P.S. I have yet to find another person who could figure out who I mean with the vaguest description imaginable. You know, that goalie with the green hair who plays for the team with red uniforms. Or that skinny guy who sang the song that has a lyric that mentions James Dean, you know kinda echo-ie. Miss you so much tonight, dude.

Wednesday, May 19, 2010


I have a rare disease: pulmonary hypertension. I also seem to have a little problem with memory. We in PHA chat always joke that CRS (can't remember shit) comes right along with SOB (shortness of breath).

I read a couple of articles recently which seems to back this up.

Great. Here I am at that time of life when we cannot remember where we put our car keys, which day we went to the store, and people's names. Now I learn I am blessed with a double shot of memory eradicator. Has my mind suddenly become too full and now must rid itself of memories to add more? Too bad we cannot purchase a flash drive for our memories, catalogued and readily available when we say, "I know her....."

And another thing. I once could handle three conversations about three topics at once. Now I attempt it and do not remember much of any of it. I love my online friends. Talking to them fills my day. I have exchanged phone calls with some of them. Connecting a voice with a name fascinates me.

Spending an hour talking to three people at once wears me out, though. I really do want to hear about your day or your latest health problem. The more we share, the more we learn. I care about my friends.

The reluctance to say no contributes to my anxiety. I fear hurting someone's feelings. I have a hard time with balance between me and thee.

Some people I want to talk to more than others. But in my Fairness to Friends Manifesto, Section B, paragraph 10, line 22, I proclaim each friend deserves respect. I try to accommodate everyone. But dear friends, if I fail to remember the conversation we had on Friday, please be kind to an old CRS brain. I thank you.
* * *
A couple of guys I talked to yesterday made me smile. I learn more each time we talk. I hope the learning continues.

Heard from a friend for the first time in awhile. Glad I had done nothing wrong.

Some things we do whether others like it or not.
* * *
You made beautiful music. You made beautiful stories. You made beautiful life.


Tuesday, May 18, 2010


Except for the bronchitis-like cough that erupts occasionally, I think this illness will go on its way soon. Oh yes, one nostril drips continually. 

My hair needs washing in the worst way.

When I was awake yesterday, I spent the time washing dishes and cleaning the cats' box. What a wonderful, exciting life.
* * *
That running ploy by Redd Foxx on "Sanford and Son" just zipped across my thoughts. Interesting what pops out of the recesses of our minds.
"This is the big one! You hear that, Elizabeth? I coming to join ya, honey!"
Comedians often serve as vanguards. Lenny Bruce comes to mind. George Carlin. Roseanne and whatshername. I am unfamiliar with today's comedians. Maybe I should check out the future.
* * *
One of these days, dude.


Monday, May 17, 2010

Willies & wonky

I am this close to becoming ill. Yesterday I had a sore throat. Today I have a tickle.  More than a year has passed since I was last sick.

 I am cold. I cover up, fall asleep. I awaken with my back wet.

Because of all the meds I take, relief is not a matter of grabbing the bottle of liquid green stuff and sleeping it off. In my pre-PH days, the green stuff served as an elixir. In pre-diagnosed days, I seldom fell ill.
* * *
One of my goodest friends called yesterday. Thirty years of my life. Almost half. Zowie. Thanks for thinking of me.
* * *
Today, I seem to have a stuffy mind.

I miss you, dude.


Sunday, May 16, 2010

Queso, queso

Connie and I went to Tacos Garcia to share some queso yesterday. I sat facing a middle-aged couple who sat side by side. How romantic, right? Well, sorta. She held an iPhone to her ear with one hand and shoveled food into her mouth with the other. The usual Saturday morning menudo crowd had the restaurant hopping. Add to that music with lots of brass. I could hear every word of the woman's conversation. At one time, she got up and left. Her companion ate chips and hot sauce like a hungry lion that had just made a kill.

I love to watch people.
* * *
Sometimes I feel like a sticky ball rolling across a dirty carpet. The trash I pick up causes me to slow down. The ball becomes lopsided and the motion bumpy.
* * *
Funny how a word or two dropped indiscriminately can change our whole world. How a single hello makes life pleasurable. Most of the time we do not know the affect of our actions. Sometimes we are lucky enough to see. The karma thing.

Another side to the equation exists, too. Allowing any and everyone to run our life because we do not want to offend. We need to respect ourselves.

We need to forgive ourselves, too. Yep, I crapped out today. I vow to try harder. Make decisions for yourself, not the way you think others expect you to do. And, if for some reason the decision proves wrong, learn and move on. Don't forget thankfulness.
* * *
 I miss you today and every day.


Saturday, May 15, 2010

Heaven's tears

I love rain. I do not love rain when the windshield wipers break. I love rain. I do not love rain when I have errands to do. I love rain. I do not love rain when I have a million packages to carry from the car to the house. I love rain. I do not love rain when the wind blows. I love rain.
* * *
A nice post on my FB wall started my day with a smile. Thanks.
* * *
I wonder if I will be missed when I leave. We all hope someone cares enough for us to mourn our passing.

Men seem more concerned with legacy than women. Something concrete, tangible.

For many women, children set the benchmark. For those of us without children, the standard is more elusive. A song written for us. A poem scribbled on the back of a envelope in our honor. To be loved for who we are rather than our outward appearance. To love another enough to let them go. To find joy in the happiness of others.

I hope to find patience with others. I hope to catch a glimpse from their perspective.
* * *
Every day cannot be John Steinbeck. Some days a hack writer shows up. Sorry about that.
* * *
I miss you, dude. What can I say?


Friday, May 14, 2010

Boob tube

Jed and Granny. Prime time television. 1962-71. At the time, hot stuff. Looking back, early television was the epitome of hokey. Black and white pictures presented on a screen no larger than the face of a cabinet radio.

When I was 3 or 4, our neighbors became the first to own a TV. I would run over to Martha's to watch Pinky Lee or Howdy Doody. The screens now had grown.

My parents built a house and we got our first console model TV (it swiveled). I remember Edward R. Murrow and Steve Allen. The Honeymooners. Peter Pan was magical -- he could really fly. I dreamed about flying for days.

A president died before our eyes. We cried as John John saluted. We saw the assassin assassinated.

Information which once took a day or two to reach us, now slaps us in the face. We watch our country bomb the tar out of Iraq. In this age of immediate information, we might just know less.

In the early days of our country, Thomas Paine, a voice in the wilderness, stirred citizens to independence. His writing persuaded, influenced thinking.

Flash forward two hundred some odd years. Writers influence, persuade. Only the writers learned subtleness and finesse.

Some folks believe what they see on TV reflects the absolute truth. Some believe what they read on the internet. The equivalent of a Petri dish for massive mind control only more insidious. Wag the Dog.

I am not one of those "a Martian resides in the Dumpster" folks. I just know the power of the press and how easily urban myths and untruths spread and gain legitimacy.

Think people.
* * *
I spent the day in bed again yesterday. I spent so much time there, my back began to hurt.
* * *
I found the answer about astronauts. I wonder what you would say. I miss you.


Thursday, May 13, 2010

Slip sliding away

Sleep, though it comes without begging, neglects to restore as it should. Even with caffeine, the elixir that usually works, the desire to return to the Land of Nod overwhelms. More sleep does not appear on the list of things to do today, however.
* * *
A great man left the world yesterday. Peace to you TW, breathe easy.
* * *
I am noting more PH symptoms lately. More SOB. I blew great numbers and my lung capacity actually has risen. So a contradiction. Sitting without o2, my sats are acceptable. My left leg and foot seem to retain more fluid than normal. Piddly stuff.

I am much better off than others. I do not face a double lung transplant. Do or die time, folks.
* * *
X takes major steps to grow. Though painful, he learns. Whatever lies on the conscience eventually taints your life. Meeting most challenges head on, though difficult at the time, keeps you strong and sane. Easier said than done, I know.
* * *
* * *
One of these days, before long ......


Wednesday, May 12, 2010

Sackcloth and ashes

I slept most of the day yesterday. The day began with a stomach thing, which was not much of a surprise considering the food consumed recently. I missed my volunteer time. CFS depends on its volunteers. I feel awful letting V and the others down.
* * *
My friend TW and his family decided to end all treatments except morphine and remodulin. I hope peace comes to him and his family.
* * *
Reflecting on your day from afar as I do, I am ever so grateful to your brothers for allowing me to participate in my small but symbolic ways. Ways that held meaning for you and us.

Your sibs present so much mystery. I know zip about one. Your family holds everything close to their vest. Though I understand privacy, especially with strangers, your family seems extra careful. Trust comes with time and actions. No worries. Om.

I find myself in a defensive fog since your death. (I have never been one to use euphemisms.) I am not proud of the way I have reacted, but wysiwyg. We all cope in our own way.

How I managed to earn your trust so quickly puzzles me. I am glad I was there for you. Like with any relationship, I gained something as well.

Some things become more clear now that you are gone. Divorces and such. How stories change to fit the present situation. Not sure if the speaker actually believes or hopes to fool. Does it matter? No, not really. In the end, you were willing to forgive and move on. I will try to follow your example.

Om. Om. Om.

Sackcloth and ashes.

Did you want the life of a star?


Tuesday, May 11, 2010

The wind blows free

TW, your long courageous fight nears an end. Many, many of us will miss your booming personality. Your stalwart fight serves as an example to us all. Peace, my friend. You have earned your rest.
* * *
Another young PHriend's battle may come to a close soon, too. He somehow became too sick for a transplant, all the while in the hospital. Now I learn his lung collapsed. I hear through the grapevine he wants to go home. Peace to you, too.
* * *
The wind blew hard enough yesterday to bend new trees to the ground. On medical center hill, elderly couples literally clung to the lightpoles. More than once, a younger person rescued an elderly man or woman. Aidan and I sat in Connie's big SUV and rocked and shook. A brown fog painted the sky.

The wind bent the grass much like we test bristles on a paintbrush. The patterns in the grass rippled in tempo with the slightly changing velocity of the wind.

 Not a single bird braved the skies. Suprisingly, very little debris filled the air except an occasional paper ripped from the hands of a ill-prepared person.

I walked Connie about 50 feet to the door of the building. I had to use my inhaler for the first time in months.

Connie pinched a nerve in her back lifting a 24-can carton of Dr Pepper for me. She hurts enough that she went to the doctor. She deals with pain all the time with her arthritis and seldom takes aspirin. I hope the drugs the doc gave her help and she takes them like she should.
* * *
Sold out. Pretty darn good, dude.

I miss you muchly.


Monday, May 10, 2010

Music to my ears

Almost Famous. I did not see the movie, but the soundtrack rocks.

My musical tastes run typical for my generation. Heavy metal once topped my list -- I still can appreciate Zep every now and then. Folk? You bet. Denver, Nitty Gritty, Judi, Carole, Joni. Americana or traditional like Emmy Lou or Rosanne makes me feel good. Down and dirty blues. Making the guitar sing and cry: Clapton, Winter, King, Waters, Vaughn. Let's not forget country boys Willie, Waylon, Walker, Williams and Wills. Wow.

I grew up listening to musical and movie soundtracks. Then came Buddy Knox, Buddy Holly, Tennessee Ernie Ford and Molly Bee and Jimmy Dean. Elvis and Ed Sullivan. The Hollies, The Beatles, The Dave Clark Five, Herman's Hermits.

Rubber Soul was the first album I bought. I played it over and over on a cheap record player.

After I moved away from home, I bought a component system. I amassed a large collection of vinyl. Some really great music. I left them in Florida along with a promise from a friend to ship them to me. He was not a friend.

Over the ensuing years, I replaced some of the missing vinyl, first with cassette tapes then with CDs.

Now I am happy playing what I have and listening to others on YouTube.

At the top of my blog, there is a link to a wonderful CD. Not only do you get great original music, but you help someone who has cf. What a great deal.
* * *
 OK, dude. I miss you. I care.


Sunday, May 9, 2010


He's like an untamed mustang, running first one way, then another. Harness the energy and watch out. He exudes a burning desire to succeed. The only tether that holds him he affixes himself.

His shadow at his heels, he breaks into a exuberant dash. Shadow meets his pace in tandem effortlessly. Freedom ever calls, reality drags him back. The small taste keeps him dreaming of moonlit meadows, the wind at his back. His reality of rocky harsh desert scorches him.

I stand on a hill watching him race. I silently send warnings. Dare I speak aloud? Will instinct take over? I continue to watch. I am the observer.
* * *
I can have cookies and ice cream for dinner, right? I ate everything in sight yesterday it seemed. I ate my way through leftovers, a third of a loaf of French bread, three-fourths of a box of French cookies with extra dark chocolate on top and a large mug of Blue Bell's Happy Tracks.

I treked around a Wallyworld supercenter. Connie and I laughed out loud until tears rolled down our cheeks.
* * *
No regrets, just love.


Saturday, May 8, 2010

Don't mess with Texas

I feel sorry for folks who have the need to blame others for their predicament. I generally try to communicate first and offer help, which might extend to a second or third try. After that, I find myself losing tolerance.

Such was the case last night. X comes to Pulmonary Hypertension Association chat occasionally. X talks the same spiel every time. Poor, poor pitiful me gets old after awhile. Last night I reached my limit. I let loose on X. I seldom get bent like that. Y tried to insert a kinder approach, but I tossed harsh words at X and left.

Most times I can ignore or just leave, but last night my fuse was short and X employed a blow torch.
* * *
"There is no love without forgiveness, and there is no forgiveness without love."
-- Bryant H. McGill
* * *

"And when the night is cloudy
There is still a light that shines on me
Shine on until tomorrow, let it be..."
You are my light, dude. Shine on.


Friday, May 7, 2010

Little things

Little things that make life worth living ...

... toast made from French bread.

... puppy tummies.

... hot coffee in a big mug on a cold day.

... finding $10 stuffed in a pocket of a jacket you have not worn in ages.

... the adoration of a 3-year-old.

... edibles made from scratch.

... ironing white shirts.

... a gentle, warm rain.

... wildflowers carpeting the land as far as you can see.

... an ice cold stream on a hot summer's day.

... curiosity.

...  a conscience.

... laughter.

... friends.

... love.

Life at its fullest

Boopie and I plan to try the new Cajun restaurant for lunch today. Boopie loves all things Cajun. I confess my tastebuds' rep as wusses holds true for Cajun, too. I ban Emeril and his bams. I hope the menu offers something for those of us with baby mouths.
* * *
Yesterday at CFS I mostly sat. The immigration office teems with a patchwork of humanity, a microcosm. Though I am not allowed to discuss individual cases, I can say the few folders I double-check fascinate me.

A father who left his small son with relatives in Iran. A father who wants the proper papers for his two young adult daughters from Ethiopia.

I listen as V asks a young man why he wants to go to Boston when he has not finished his paperwork. She tells him jobs there are scarce. She finally makes copies of the paperwork he has completed. As he leaves, she tells him to check with Catholic Services in Boston. Yeah, right.

Did I tell you the volunteer (me) has her own office? Yep. And it offers a scenic view of the parking spaces in front of the building and the street. I sit for a bit and watch people come and go. A woman leaves carrying several plastic bags and a gallon of something I suspect is bleach. CFS offers groceries to those who need help.

A policeman stands in the shade of a tree. Another, older cop pulls up. The two stand for a few minutes while the younger one explains something. His arms flail about as he talks. The pair then head into the building.

A couple of twenty-ish women with their sweatshirts tied around their waists and sipping large drinks head for the inside. Their pace indicates purpose.

A youngish man carrying a plastic bag emerges from the building. He walks across the street, stops and lights a cigarette. Another man walks up, gets a light, and walks on.

The director of the immigration branch of CFS comes in to introduce himself. He tells me V speaks well of me and my ability.

Across the street, behind a extra tall stockade fence, the Mondrian-like playground equipment stands out. The area behind the fence represents the truly Christian work of the founder of CityChurch. (More on him and his mission another time.) Also behind the fence stands a monolithic structure which rises more than three stories. Made of wood, the tower narrows toward its top.

V tells me next week she will be less busy and can show me more. She leaves a stack of folders on my desk, saying to go when I am finished. The offices empty for lunch. I hear someone making copies. I tidy the desk. As I depart, I meet a young man who tells me he intreprets for CFS. He flashes me a winning smile. That gives me a light heart.
* * *
Your bro and I had a great talk yesterday. I gain more and more respect for him. I see a similar heart in him. Walking in your shadow takes lots of moxie. I am glad I got to know some of your real world. Nesting dolls come to mind, only an endless number.
* * *
Go Bruins! Your dad misses you most right now. Add my name to that list, too.


Thursday, May 6, 2010

Walking the walk

After all that praise, the visit with the doc yesterday turned out unsatisfactory. I think it was a combination of factors.

The big news: my pulmonary hypertension is primary, not secondary. By the time I had absorbed that news, I was in another room doing my FEV and gas exchanges, etc. Then bloodwork. I am not really sure why he changed the diagnosis after all this time, I think he told me but my mind was stuck in neutral. Anyway, I do not think in the long run, the fact makes much difference. He did say my meds held the major symptoms, and thus the major meds, at bay. He also said he now leans toward PH as the cause of my blackouts.

Lack of time played a part in the unsatisfactory. I had the feeling of rush this time. A bad day on his part, who knows.
* * *
All in all, yesterday proved worthy of mention. I had some rather wonderful conversations and learned a bunch about two of the people. I shared a bit of my heart, too. Talking with the third person becomes even more comfortable over time. That friendship connected right from the get-go.

Your CD took top honors as talk topics. What a wonderful tribute to you. I wonder which song you wrote last. I will have to ask. I am putting Kirsop's copies in the mail today. I promised him "Because of a Woman" and "The Postman Delivers." He seemed thrilled. I know he misses you too.

After being blasted yesterday, not once, but twice, I am ready to move on. Que sera sera. Probably a great loss for all concerned, and my bad.

I got some good advice yesterday. I am the one in control of my thoughts. No one can "make" me feel bad. I am the one who allows events to cause me anger or sadness. I should work on me, not lash out at others.
* * *
I had a few minutes of just plain sweet yesterday, too. Connie, Zane and I went to the grocery to pick up some soup. If angels walk on earth, Zane fills the bill.
* * *
Today marks a new day, dude, but I will never forget.


Wednesday, May 5, 2010

On the road

Last night leg, feet and toe cramps had me up and down. I am sure Pogo wondered why I kept leaping up and throwing the covers off. I drank orange juice and went back to bed. I finally managed to put together two hours of sleep.

Got nice notes from several people yesterday. What an inexpensive way to make someone's day. I am thankful for each of you. Each of you offers me lessons in personal growth. Each enriches my life tremendously.

We all have burdens to carry. Friends help by taking the weight off occasionally. Our personalities play a role in our ability to move forward and not let the load slow us down or even stop us. Some may travel a few feet, then inertia takes over. Their tolerance falls far short of ours. The weight seems heavier, the road more uneven. Sometimes we forget we travel the same road. The destination is the same. Treking the path is not a race -- it is a journey. We can offer help but we cannot force it on someone. We can journey alone or with others. But ultimately the journey is ours.

The deck hed under the name of my blog says it all. Read the words to read my heart.
* * *
I cannot wait to hear the music -- it will both comfort and hurt.


P.S. The CD: perfection. I hope it pleases you as much as it does me.

Tuesday, May 4, 2010

It's my life

Today begins the first of what I hope will be many days of helping V at Catholic Family Service. I need a dose of the real world. Tyler Street Resource Center, where CFS resides, houses all the agencies that help the homeless. I drive by there occasionally and see men hanging around outside the building.

For me, this experience will not be easy. Fortunately, once I get past the front door, and up to CFS, my work will involve paper and other things I am familiar with. So I guess this experience amounts to a very small dose of reality. Baby steps, baby steps.
* * *
Tomorrow I see my doc. We may decide, since the blackouts fall on me only sporadically, to wait for the next one. Or we may opt for further testing. He always splains things to me and lets me be a part of the decision. He knows I have done my research and he knows I understand when he tells me what he thinks. We have fun. As doctors go, he is at the zenith. Did I mention he has the looks of a movie star, the kindness of Mother Teresa, and the accent of Ricky Ricardo, sort of, and eyes you fall into?
* * *
Pogo thinks blog time equals his time. He rubs his chin on the monitor. He scrunches up as tiny as he can between the keyboard and the monitor. He sits like Budda next to the mouse. He stretches from the desk to my lap, fairly oozing nonchalance. Then he tries to lick my fingers while I type. Small subtle signs.
* * *
I am a procrastinator, though not as bad as in the past. In college, I served as prop mistress for the drama department's spring musical. My job entailed finding props for the show and then making sure they were placed where they were supposed to be every night of the run. The day before the opening, I lacked a cake box, one of the critical props. All I had to do was go to a large city nearby and ask for one. Because I had procrastinated, the pressure got to me. I came unglued. Stressed out. Connie bailed me out. I did learn a lesson though. I may put off chores or whatever for awhile, but I never let it hit critical mass anymore.
* * *
I cannot say I miss you any less. Such a large mark in such a short time.


Monday, May 3, 2010

5 yellow roses

Five yellow roses. One for each of you. A magical evening. A great way to tie it up neatly. If only you could wrap up emotions and love. I hope everyone appreciates the effort, planning and hard work that went into your final send-off. Those who matter do.

One of the musicians said, "Just did the best I could...." You had an uncanny way of finding people who at the very core of themselves prove honorable.

* * *
Thinking of Pete today while he takes the National Teacher Exam. He deserves this one. And he signed up to play soccer. Woo hoo.

* * *
The week ahead looks busy, for me at least. Tomorrow I start volunteering at CFS. Wednesday I see the doc. Thursday CFS. Friday lunch with a friend. Wow. Miss Social Calendar here.

* * *
I hold not one regret. I love you.


Sunday, May 2, 2010

Hiding love away

Somehow this tune seems appropriate today. Enjoy.

Yesterday the CF world lost two of its own and buried a third. At this point in my life, I am in the cyberworld of death and misery. The real world also challenges me.

First the cyberworld.

I have a disease -- pulmonary hypertension -- which ranks on the charts of diseases as rare. When I first learned of this, I went web trolling. What I found scared the crap out of me. Then I found the Pulmonary Hypertension Association and the wonderful people who visit the chat room. I learned all about my disease and how to take charge.

Now I am one of the "senior" chatters. We extended that community to FB. Through the chat feature, we can talk anytime. I now know many wonderful people from all across the country and around the world as well.

Because of the rarity of my disease, I know a great percentage of its sufferers. Death does overtake some of us.

The CF milieu faces death much more frequently, it seems, and the ones who leave this world leave so much earlier. There exists a sadness there. But also great joy. The community cares for its own.

My real world features conflict, sorrow, uncertainty, unhappiness, depression. My real world also offers joy, love, appreciation. Both aspects teach me, temper me and mold me.

Sometimes the combination of worlds weighs heavy. My friends always manage to toss me the life buoy. Thanks, guys.

* * *
I will always care.


Saturday, May 1, 2010

Party hearty

One of the CFers you told me to take under my wing if she followed your advice and came to PH chat, soon will join you. We did make connection on FB, but she became sick enough to admit shortly after. Now, she lets go.

How can I put this? Sometimes I feel as if a piece of me dies when even those I know only slightly leave this earth. Mourning what was not, I guess.

If wishes were airplanes, I would be in Boston right now. Just for you. I did not come for many reasons. The day holds the potential for so many emotion-inducing moments. Sometimes a solo works best, sometimes a chorus.

I most certainly will be there in spirit tonight. The party culminates an effort by your brothers to honor you. Your folks played a major part in it, too. I am sorry you did not live to bask in the praises. But in my heart, I know you know. The goonies did good.

You were a great one, dude.


P.S. Your CF friend can breathe easy now. Rest in peace, Sonia.